Saturday, 7 June 2014

The Girl from Agassiz

I actually have some friends I have never met…modern technology makes it possible. I heard from one of those friends this week; she had bad news. It’s funny because she was really on my mind. We hadn’t communicated in a long time, but there she was all of a sudden, on my mind. I meant to email her, but she beat me to it.

I first heard from Sharon in an email a couple of years ago. She introduced herself as the chiropractor patient of a friend of ours: Darren and his wife Tracey. She told me that her husband had recently been diagnosed with ALS and that she had been reading my blog. We communicated back and forth for a while. We shared our stories and because Mike was further along in the illness, I was able to answer some questions and give her a little advice. 

I remember telling her to get a jump on the home care situation as we had some major issues getting home care and then getting consistent care givers.

Anyway, after over a year I heard from Sharon the other day. She reminded me who she was, “The girl from Agassiz…Darren is my Chiropractor.” I appreciate reminders, but this time it wasn’t necessary. I remembered those things and that her husband’s name was Peter (same as my brother in law) and that they have three children. She was heavy on my heart just a couple of weeks ago…I definitely remembered her.

Sharon went on to say that, “Peter went to be with his Saviour on September 13, 2013 after a brief stay in hospice.” What?! I couldn’t believe it. He was only diagnosed in May, of 2012. She said that when she feels brave, she reads my blog and finds encouragement from it. She said she feels part of me and Mike somehow as “I see the progression and hear the hurt in your writings.” She continued, “The battle belongs to the Lord. I asked God this morning why, why and I am waiting patiently for His response. But each day through my sorrow, I know that He loves me and my beautiful children.” And she closed by saying she is praying for us.

I got back to her right away with our condolences and a bunch of questions and she graciously answered them all. She told me the whole story and I cried like a baby. She explained that they couldn’t get the home care support they needed. She said that one person would come when two were needed. She said that she fought hard to get the second person and it finally was okayed, but because of a staff shortage, they often were left with one care giver or no care giver and she couldn’t do it on her own. When the social worker suggested that Peter go into Hospice because they would have constant care, they reluctantly agreed. It sounded like they didn’t really have a choice.

Sharon says, “I called the kids and they came and we gathered around Peter as he said to us it's a good house, it's been a good time here kids.  Of course it was a very, very sad time as Peter and I rolled away in the ambulance and had to say goodbye to his house of 22 years.  It was probably one of the most emotional times in the journey.” 

She said that Peter’s health was good before they went. He was still breathing well and talking, but as soon as they left their home, his health drastically declined over the course of 4 days. And regarding that fourth day in hospice, Sharon said, “The day went quick with family in and out saying their good byes ect.  At around 5:00 it was me and the kids and I gently woke Peter and asked if he was ready to go home to meet Jesus...he opened his eyes, looked at me and said yes.  I said it is okay to go my sweet Peter, the kids and I release need to fight.  We love you. Shortly there after he took his last breath.  It is a heart wrenching experience.  I can't begin to explain the agony of it all.” 

I cant begin to comprehend the agony of it all, but I can relate to the difficulties of getting proper home care support. Mike and I waited too long to request home care (because that’s the way we are) and then when we did request it, it took a long time to even get our case manager over -- a nurse from Fraser Health. I remember it was August and we couldn't get an appointment until October and then it took another few months to get systems in place and actually get the home care support started. Our extremely over-worked case manager had to take time off and then lost our paper work. The occupational therapists had to evaluate the environment to make sure it was safe for the home care people for WCB (insurance) purposes. We had to get lifts in place and there was a concern about the limited space in the bathroom and the quarter inch lip to get into the shower. 

I’m a very calm person which can be a bit of a detriment. I was having a breakdown on the inside and all was calm and peaceful on the outside, so it looked like I was perfectly fine. When I think back, Its like, “How could I be fine?!” But there came a day when I just wasn’t okay and I couldn’t cope any longer. Still pretty calm on the outside, but close to the edge on the inside, I called Nathan and I called the Occupational Therapist who I had gotten to know well and knew she would help. They both came over and realized I wasn’t okay and the home care delay came to an abrupt end. 

My exhaustion didn’t end there though. It took months of training people…countless people. I kept calling and saying we have to have consistency…its imperative! I would remind them that Mike couldn’t talk, he was unable to tell the care giver what he wanted and what to do next. It got to the point where I told them if they were sending a new person, not to bother. It was more work than if I took care of Mike myself. Slowly but surely things started to come together. I called all the time…I was relentless!

Without proper home care support, managing this illness is impossible. Even with the excellent care we have worked so hard to establish and the support of family, this job is still too big for me. It’s an extremely important assignment that brings me so much joy, but often overwhelms me. All I can do is take one day at a time and rely on God who is bigger than it all!

When Sharon shared her story with me, I was crushed. I am so sad and at first I was angry at the system that failed her and her husband. But ultimately God is in control. He decides when we come and when we go and it was Peter’s time to go. I grieve for Sharon and her kids but rejoice for Peter who is now free from ALS and in the presence of the Lord.

The system will fail us, people will fail us, our bodies will fail us, but God will never fail us!
If you suffer according to God’s will, you should commit yourself to Him and keep on doing what is right and trust God who created you, for He will never fail you. 1 Peter 4:19

With the news of Peter’s passing that blend of sorrow and joy I have spoken of before has hit an all time high, or should I say low?

There is strength within our sorrow, there is beauty in our tears. You meet us in our mourning with the love that casts out fear. You are working in our waiting, You sanctify us…and beyond our understanding, you are teaching us to trust. Your plans are still to prosper, you have not forgotten us you are with us in the fire and the flood. Your are faithful forever, perfect in love, you are sovereign over us. - Aaron Keyes

Sharon and Peter and family at the ALS walk last year in Agassiz.
Sharon said it was great that Peter was still with us to meet his first grandchild, a boy born in May 2013. She also said that Peter never lost his voice and continued to talk about God all the was such a blessing!

Please pray for Sharon, the girl from Agassiz and her family and please pray for our good buddy Neil and his wife Donna and family from Chilliwack (Neil with his granddaughters  pictured below) and please continue to pray for Mike and all those affected by ALS. Thank you!

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